Disabilities Common After Extreme Premature Birth

Action Points

Explain to interested patients that the study found that mental impairment, physical disabilities, and need for special health services are common in children born before 33 weeks of gestation.

Explain that outcomes for individual babies depend on many factors and may differ greatly from the averages found in this and other studies.

PARIS, March 7 -- Infants born before 33 weeks gestation are more likely to show physical disabilities and cognitive deficits as they grow, with the degree of impairment linked to gestational age at birth, researchers here said.

Nearly 40% of five-year-olds who were born at 22 to 32 weeks gestation showed some degree of disability and 34% required special healthcare resources, reported Beatrice Larroque, M.D., Ph.D., of the French national health research agency INSERM, and colleagues, in the March 8 issue of The Lancet.

Only 12% of a comparison group born at full term (39-40 weeks gestation) experienced disabilities and just 16% required special care.

"Our findings show that [very-preterm] children need a high level of specialized care after discharge from neonatal intensive care units and that this requirement continues at five years of age for a large proportion of very preterm children," the researchers said.

They noted that the number of children who survive very-preterm birth has increased as neonatologists have become more adept at saving babies who previously would have died.

From 1.1% to 1.6% of all live births now occur before 33 weeks of gestation, they estimated.

The researchers said their results "raise questions about health and provision of rehabilitation services, and the cost of these services to families and society."

Deaths and other losses to follow-up reduced the number of participants to 1,817 in the preterm group and 396 in the control group who were available for at least some evaluations at age 5.

In addition to assessing disabilities involving vision, hearing, and speech, Dr. Larroque and colleagues evaluated children for cognitive function using the Kaufman Assessment Battery for Children's memory processing composite scale.

Use of special services such as speech, hearing, and occupational therapy, psychiatric counseling, and/or institutional care was reported by parents.

Relative to the control group, participants born very preterm were much more likely to experience disabilities or need specialized care:

Severe disability, OR 23.4 (95% CI 3.2 to 169.0)

Care in specialized center since birth, OR 8.2 (95% CI 4.3 to 15.5)

Special care at present, OR 2.6 (95% CI 1.9 to 3.4)

Psychologist or psychiatrist in past year, OR 2.6 (95% CI 1.8 to 3.7)

The study also found that children born at 24 to 28 weeks gestation had generally poorer outcomes than those born at 31 to 32 weeks. Among the specific differences:

Overall disability rates, 48% versus 34%

Care in specialized center since birth, 29% versus 12%

Special care at present, 41% versus 29%

Occupational therapist at present, 13% versus 4%

Cerebral palsy, 14% versus 6%

There were no cases of cerebral palsy in the control group.

Memory processing scores were available for 1,534 participants in the very preterm group and in 320 of the control group. Scoring is similar to IQ, with a standardized mean of 100 for the general population.

In the very preterm group, 21% had scores of 70 to 84, compared with 8% in the control group (P<0.0001).

About 9% in the very preterm group had scores of 55 to 69, versus 3% of the control group (P<0.0001).

Dr. Larroque and colleagues said their data may actually underestimate the frequency of cognitive impairment in very preterm children. More of that group did not finish the test and were not scored. Scores were not available for more of the children with cerebral palsy than for other children. And socially disadvantaged children who were at increased risk of lower cognitive scores were lost to follow-up more commonly than other children.

In an accompanying commentary, Mary Jane Platt, M.B., of the University of Liverpool in England, said the French study confirmed earlier research on smaller and narrower groups of preterm infants.

She said the study would be particularly useful to people who plan health services.

The EPIPAGE results indicate that the number of very preterm babies born each year who are disabled or impaired enough to require long-term special care is about 13-fold higher than the number born with cystic fibrosis, Dr. Platt said.

It's also comparable to the number of children with autism spectrum disorders, she said.

"The EPIPAGE study reminds us that children born before 33 weeks need care and support that lasts far beyond discharge from the neonatal care unit," Dr. Platt wrote.

In the United States, about 80,000 children are born each year before 33 weeks of gestation.

The study was funded by INSERM, the Directorate General for Health of the Ministry for Social Affairs, Merck Sharp and Dohme-Chibret, Medical Research Foundation, and the French Department of Health.

The study authors and Dr. Platt reported no potential conflicts of interest.

Reviewed by Robert Jasmer, MD Associate Clinical Professor of Medicine, University of California, San Francisco

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